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Old Sat Jun 17, 2017, 06:56 AM
kirag1964 kirag1964 is offline
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Join Date: Mar 2017
Location: Philadelphia
Posts: 20
Quote:
Originally Posted by Hopeful View Post
Hi Kira,

I think it was wise not to watch-and-wait if your were becoming transfusion dependent, and your doctors thought the cause was immune mediated.

The sooner you can wipe out the rogue T-cells, the better for the health of your remaining stem cells!

You are hopefully through the worst of your treatment and will start to feel stronger with each passing day.

Best of luck!
Thank you!

It's honestly been a rough week. Apparently what my body likes to do when confronted with new medications is 1) get hives and rashes (I was not surprised because I am allergic to multiple antibiotics) and 2) swell up like a melon. My first issue was pretty severe hives on Day 1, but we were able to get on top of that. Then I got fluid overloaded (I was up at least 10 pounds in 48 hours - and that weight was taken after 2 doses of Lasix!), and developed pulmonary edema. At first I needed 4 liters of O2 to maintain sats in the 90s; now I'm on 1-2 liters, but my sats continue to drop into the 80s on room air, at least while I'm infusing ATG.

As a result, I have been threading a needle to get the medication in me! At first they thought I was having an anaphylactic reaction to the ATG, which would have been heartbreaking because we would have needed to discontinue treatment or switch to rATG. However, after that weight check it became clear that pulmonary edema was definitely the cause of my respiratory issues. But now I can only tolerate EXTREMELY slow infusions without exacerbating the edema - so instead of what most people do (first infusion slow, following infusions faster), my first infusion was 12 hours, and the following ones have been 24 hours (the second day was interrupted halfway thru by my respiratory distress and will be made up at the end on "Day 5").

So as long as the infusion is slow and I stay on oxygen and take benadryl regularly (I can now recogize the early signs of an inflammatory response so do this as needed), I am getting thru it! At this very moment I am more than halfway through bag 4, and then will just have the "make-up" bag from Day 2 to finish. Luckily I walked in here in pretty good shape or I'm not sure I could have handled the complications. I'm so glad I didn't wait!

I also know that I'm not going home until my sats are better on room air, but I don't think we can really address that until I'm done infusing.

And yes, my doctor definitely thinks it's autoimmune. I have a small PNH clone, and my telomeres are good. In addition, I have been able to use the new protocol with Promacta. So the chances are very very good that this will work (85-90%)!
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Kira - 52 y.o. mother of 4, diagnosed with MAA April 2017; ATG/CsA treatment scheduled for June 2017
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